-Hi Stephanie,
I have a son who has Noonan Syndrome. He was officially diagnosed only a few
months agao with the SOS1 gene mutataion. If you would like to chat please
contact me at my email add l.robinson660@btinternetcom Connor has his own
website at www.caringbridge.org/visit/connorrobinson It tells his story, has
photos and a montage. It keeps friends and family up to date on his progress. I
look forward to hearing from you.

Lynda mum to Lee and Connor






-- In noonan_support@yahoogroups.com, Robyn Ferrier <dictatorqueen@...> wrote:
>
> Hi Stephanie
>
> I'll email you from my other account - LaurenwithNS@...
>
> Lauren turned 1 on February 18th and also has a RAF1 mutation...
>
> ttys,
>
> ~Robyn
>
> --- On Fri, 3/20/09, Stephanie <chefsteph82@...> wrote:
> From: Stephanie <chefsteph82@...>
> Subject: [noonan_support] 1 year old with ns
> To: noonan_support@yahoogroups.com
> Received: Friday, March 20, 2009, 3:44 PM
>
> hello everyone! my son turned 1 on March 6, 2009. On March 3rd we were told
> that he has Noonans Syndrom, specificly RAF1. I was wondering if there is
> anyone else out there with the same thing that would tell me what to expect.
> Anyone know of any good websites to do research on? It is very frustrating to
> do a search and not find anything!! Thanks!
>
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>
>
>
>
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